TEEWA-1 study (Teens Living with Antiretrovirals)

Over the last two decades, with the introduction of antiretroviral therapy, the life expectancy of children born with HIV has improved remarkably, and they are now reaching adolescence and adulthood. While the biomedical aspects and therapeutic challenges of HIV are well documented, little is known about the family and social situations and the living conditions of these children.

ObjectivesThe overall objective of the TEEWA study was to assess the situation and the needs of perinatally HIV infected children on lifelong ARV therapy, who were entering adolescence and adulthood, in the Thai setting.

MethodsTEEWA-1 study was a cross-sectionnal survey conducted in 2010-2013 by PHPT. The study targeted all perinatally infected adolescents aged 12 to 19 receiving ARV from 20 participating hospitals, covering rural, periurban, and urban areas throughout Thailand. The survey had two components :

a self-administered questionnaire filled by the adolescent, documenting aspects of everyday life including household environment, school, work, health/medications, interpersonal relationships, and daily activities. There was no reference to HIV, AIDS or ART in the adolescent’s questionnaire in order to prevent unintended disclosure.

A face-to-face guided survey of the adolescent’s primary caregiver collecting information on socio-demographic characteristics of the caregiver, and major events in the adolescent’s life history including illness/death of biological parents, HIV-related medical history, ART treatment and adherence, disclosure of HIV status to the adolescent, caregiver-adolescent relationship, and experiences of discrimination.

A control group was be composed of presumed uninfected adolescents randomly selected in the general population, matched by age, sex and area of residence drawn with those born with HIV.

Preliminary resultsA total of 941 perinatally HIV infected adolescents (aged 12 to 19) were receiving ART from the 19 participating hospitals in the TEEWA study. 576 adolescents living in family settings and their caregivers could be interviewed, as well as 136 living in orphanages. In the general population, 173 adolescents and their caregivers could be interviewed.

The total sample contained slightly more girls (56%) than boys (44%). Their average age was 14, with 8% of adolescents being 18 or older, and only 2% being 19 or older. In all, 84% of the adolescents were living with their families and 16% in institutions. Many of the adolescents were orphans: half (50%) had lost their mother and father, 19% their mother and 17% their father. Those living in family settings were, in most cases, in the care of their grandparents (37%), one of their parents (31%), or more distant relatives such as aunts and uncles (20%).

Compared to the controls, significantly fewer adolescents born with HIV had experienced puberty before age 15 (p<0.01). Adolescents did not differ in terms of sex education, sexual intercourse, romantic relationships or friendships and risky behaviours. However, at all ages, adolescents born with HIV were less likely to plan for marriage (p<0.02) or parenthood (p<0.01). Girls born with HIV were less likely to plan for higher education (p<0.01)(Rolland-Guillard L, et al).

Nearly half (48%) of the adolescents had evidence of suboptimal adherence, and factors associated to suboptimal adherence were a younger age, having grandparents or extended family members as the primary caregiver, caregiver-assessed poor intellectual ability, having a boy/girlfriend, self-reported unhappiness and easiness in asking doctors questions (Xu L, et al.).

​Funding : This work was supported by Sidaction, grant AI22-1/01855, and Oxfam Great Britain, grant THAA51.